By Auntmarysgloves Latest Reply 2016-03-20 15:23:55 -0500
Started 2014-01-15 17:04:23 -0600

I am hoping there is another person or parent out there that may be able to identify with or have some words of advice. We have a 14 year old son who was diagnosed with Type 1 at age 9. At 10 years old we found a lesion on his right shin. He was diagnosed with NLD. He has since developed lesions on both shins, the back of his calf, his upper thigh and now his forearm. He is very disciplined with his BG levels and we are very involved with managing him. His A1C levels are 7.1. So, needless to say we are very bewildered by him having this and concerned for his future.
I have tried to do my research and feel as if I am running into walls. We are currently trying laser treatments in hopes of dealing with the lesions he already has. There is a doctor in Denmark who wrote a case study about successful treatment with red light therapy, but doctors in the US do not do that (at least that is what the doctors here are telling me).
My concern is what is this going to look like in 20 years? Why is there no real research being done? From what I can see on this site, there are plenty of people who are dealing with this. Is there any kind of natural helps anyone has found useful? I would love to treat the disease and not just try and catch the lesions and then treat them.
Thanks for any help, advice or experiences you may have to offer.
Concerned Mom of a Diabetic Boy

4 replies

Magg0228 2016-03-20 15:23:55 -0500 Report

My daughter who is 15 now started to get the NLD lesions when she was 12. It is all over the front and sides of her shins. She was diagnosed with T1D when she was 3. No specialist has been able to help us. One pediatric dermatologist even had to google it because she had never seen it before because it is so rare in children. And this was at the University of Miami. I feel your pain. If you have come across anything that works let me know. Ty

jayabee52 2014-01-16 10:14:57 -0600 Report

Howdy AuntMary
For those who do not know what NLD is all about the initials stand for Necrobiosis Lipoidica Diabeticorum. For a more complete description and photos of the condition please see here ~ .

I have had it for a number of years (first Dx'd in 2009 but have had it for several yrs prior) and upon Dx I was Rx'd a cortisone cream to rub on it. It didn't seem to remove the lesions. So I didn't renew the Rx. Of the many conditions and "medical challenges" I face, this is one of low priority to me, so unless a scab forms and breaks open, I really pay it no mind (of course I am currently 61 and am almost done with my life).

I can understand, however because your 14 yo is just starting life and is concerned with the opposite sex and attracting a life mate and so appearance is quite important to him (if not yet, he will be).

"what is this going to look like in 20 years?" I have had mine for over 10 yrs and mind has changed shapes and color (light to deep red and back again) but it has remained essentially the same in general volume and size (mine is on my right shin)

You ask about treatments for NLD. Please take a look at this Medscape article here ~ (please look at the following links telling more about other potential treatments)

The medscape article does not offer much hope that this will go away quickly or easily.

Praying God's best for you and yours

James Baker

Auntmarysgloves 2014-01-16 23:14:57 -0600 Report

Mr. Baker, Thank you for your response. I appreciate that you posted an explain action of NLD. It helps to know an older gentle men's perspective. Unfortunately our sons lesions have continued to grow larger and deeper over the last couple of years. If they had stayed small or even contained my concerns would not be as great. I will read the articles you posted. Maybe we will find some new information. Again, I truly appreciate your care and help. I trust no matter what the outcome, God will provide his needs.

101 Diabetics
101 Diabetics 2014-01-15 20:41:55 -0600 Report

I'm sorry to hear about your situation. But it could only be a very loving parent to try so hard to make it okay for your son.

Although I cannot help you, I know there may be other members who should come along to offer you some suggestions.

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